Thriving Thursday

<---Yup....This is officially how I feel lately!

My headaches have been HORRIBLE these last few days (tis' why I haven't been blogging-sorry)

I don't know what's happening inside my head, and maybe I am a bit afraid to find out....The pain and pressure has made me dizzy, sick to my stomach and extremely irritable! (sorry Rich)

I see my Neurologist next Friday, so maybe I can get some help. In the meantime, I am barely hanging on. The Percocet helps, but makes me feel foggy and loopy......Tramadol seems to do the trick, but I am almost out of those---so what do I do?!!?

At my appointment next week....I am going to beg for answers. I don't know very many people who are walking around with untreated Hydrocephalus. But I did join a group on Facebook for folks that have Hydrocephalus --and do not have a shunt....the group though....is eerily quiet. Maybe I should post and get it going...?

Anyways, my 'Thriving Thursday'....is just me, at my wits end...and in pain. It's amazing how much a headache can throw everything off balance (figuratively and literally) But even though the pain in my head, is screaming at me to throw over the covers and hide....I won't do that.

I am here....and I am THRIVING.

Motivational Monday

FIGHT FIGHT FIGHT!

It's tough hearing that something may be wrong with your child. Even though I knew that my daughter was "different", hearing it from someone else made me feel so hopeless. But I was ready...ready to finally hear the test results that basically analyzed my daughter from head-to-toe.

As the school psychologist, Special Education teachers, and IEP group sat across from me, and unloaded the inch thick information to me, I felt the room spinning. I didn't want to hear what they had to say...but I knew I had to for my daughter's sake.

My oldest daughter is 14 yrs old, and she has struggled in school, since the beginning. Year after year we had her tested in all academic areas, to try to get her some help, but she always falls just above the line, disqualifying her from getting any help. Her issues continued to get worse, year after year, this year being the worst yet.

When the group began talking, what they said did not surprise me at all. "Tests don't lie", one in the group said. "We feel that Bailey definitely qualifies for services." (Duh? Ya think?) "Further testing shows.......". I went into a blank stare and just nodded in agreement.

The words swirled around my head like a merry-go-round--"Autism", "Aspergers", "Depression", "ADD". I wanted to run from the room and hide from the fear, that these words brought with them. "No...Not MY daughter!! She just needs some help in school....She isn't Autistic! " My mind was flooded with thoughts, and denial.

But I shut my eyes, and took a deep breath. "Thrive Kristi...Thrive", I thought. Thriving isn't just for me, and my NF... it doesn't stop there. It's so much more than just me. It's everything around me, everyone around me.

My daughter needs me to be strong for her....to help show her that she too can THRIVE, with whatever it is that is trying to stop her from what she wants to do. She is looking to me, to help guide her through life.

As I left the meeting at the school, part of me felt peaceful. Sure we now have this new "block" in front of us to deal with...a new set of diagnoses...but instead of the Block...keeping us from THRIVING, we are using it as a step, to get to where we want to be.

Bailey will be ok. NF, Aspergers, ADD--whatever it is we have to deal with, we will deal with. Nothing will stop us from achieving our goals, and nothing will stop me from trying to be the best mommy I can.

Thriving Thursday

“Move out of your comfort zone.

You can only grow if you are willing to feel awkward and uncomfortable when you try something new.”

Brian Tracy

Fear doesn't rob you of anything directly. Fear simply creates an uncomfortable physical and mental state. This is a place I have lived in my entire life. Fearful of what other people thought of me having a disorder like Neurofibromatosis.

I was even scared of my NF...After years of denying -- avoiding my own diagnoses, finally accepting it, brought with it, many unknowns. I didn't like it at all, but avoiding the NF wasn't doing me any good.

When I chose to "Thrive" with NF....It wasn't just that I was finally taking responsibility for my health, it was more that I was choosing to show my children, and others, that staying in the fear was not an option. The fear was done controlling me! I wanted to help show people that they were not alone in their world of Neurofibromatosis.

But when I walked into Monique's Salon, in Spokane Valley, the fear hit me hard! I didn't know if the staff had ever seen anyone with Neurofibromatosis. Would they want to touch me? Would they see my bumps and freak out? I was scared that they would see the tumors on me and run the other direction--I was embarrassed.

The women there in fact had never seen or worked on anyone with NF...But I found comfort when the women who were involved in my make-over, truly wanted to know more, and understand what it was I live with everyday. They listened and asked questions about my NF...they were caring with the way they took care of me.

Sometimes, growth, requires us to become a bit uncomfortable. Stepping directly into yours fears, takes a lot of courage, but once you do it, the strength you gain is amazing!

I was made to feel amazing about my body. The ladies were not afraid of me, or the NF. Their loving hands massaged and worked on my body and taught me that not everyone is afraid of what they don't understand.

I wanted to THANK the staff of Monique's Salon....You helped me to be less afraid of what people think....you helped me overcome the fear of the whole "Spa Scene".

I loved my Make-Over day.....Thank you for being a part of helping me grow...and helping me THRIVE with NF!

Living with Normal Pressure Hydrocephalus

I found out about my Hydrocephalus in May of last year. I finally had some answers as to why I had been having so many headaches and unbearable pain.

But in reality, all that finding out about my Hydrocephalus did, was leave me with more questions. Why wasn't this found sooner? Why, even though I would cry when I'd see the Dr, wasn't something done? How am I walking around with this, when most people have had several surgeries, and shunts installed. These are questions I still have today...and even my Neurologist and Neurosurgeon can't answer them.

My Drs tell me that I have had this my entire life...and have "compensated". I guess my larger sized head, isn't just because I have more brains than others. (ha ha ha) ;)

2009 gave me an overload of information, with very little answers, and it frustrates me so much, that there isn't a "fix" for me. But just like having no "fix" for Neurofibromatosis, I have just accepted that sometimes your struggles are set before you, so that you truly learn the value of life...and I have learned that.

I try my best to live everyday, the very best I can. I am trying to leave a legacy behind that is inspiring and positive. I don't want my children to remember their mommy as someone who was in pain and always complaining about what she has to deal with.

My life is a blessing--NF, Hydrocephalus and all that having that means!!

Free at last, Free at last.....

Thank God almighty, we are free at last!

My kids came home from school on Friday, excited for the 3-day weekend. When I asked them if they knew WHY we were blessed with an extra day to sleep in, I was surprised to hear them respond with not only that it was Martin Luther King day, but with the reason why we celebrate this man.

Riley, my precocious 9 yr old, proudly stood straight, with shoulders back and told me that this was the man who fought for freedom for black people. "James Earl Ray shot and killed him. And he won a Nobel Prize. He was very important!"

Rachel, my sprightly 7 yr old, piped in and said "ya, and he's the guy, who said 'free at last, free at last, thank you God, we are free at last!' And that means that black people don't have to be afraid anymore!"

Impressed and in shock, I just hugged my girls and praised them for what they had to say about Martin Luther King! Riley asked me why good people have to die, and I told her that sometimes people aren't ready to change...that they are afraid of what the change might mean. So they set out to destroy, anyone who makes them feel uncomfortable.

Wise way beyond her years, Riley responds, "Well, someone needs to change that!" Yes indeed, this kind of thing needs to stop, but sadly, it never will. There will ALWAYS be someone, somewhere who disagrees with change...with progress, but should never ever stop us from pushing forward.

Continue to fight for what you believe in! Fight for change! Leave your legacy behind!